British Myology Society Second Annual Meeting September 2010

British Myology Society Second Annual Meeting September 2010 St Anne’s College, Oxford Michael Hanna MSG Beaver Hollow, 2010 1

Specific aims UK multidisicplinary professional body • Agreeing best practice and standards of care eg Diagnostic criteria Commissioning • Agreeing standards of training clinical myology/ pathology • Promote translational research • Adult and paediatric networks • Promote patient registries • Promote clinical trials

BRITISH MYOLOGY SOCIETY Independent professional body of neuromuscular experts Consultant membership nm specialists Adult and paed neurologists Geneticists Pathologists Therapists (CE’s) Trainee membership Overseas membership

Key partners with the BMS MRC centre for neuromuscular disease Patient organisations MDC BPNS TREATNMD NHS- NCG coordinated network diagnostic centres for rare nm diseases

CLINICAL TRIALS UK Clinical trials development/support North and South Trial Centres UK Trial centre Network Patient Registries UK Clinical Networks Bio-stats Trial design Outcomes research Trial strategy British Myology Society/British Peripheral Nerve society/TREAT-NMD Patient Organizations and Charities

Clinical Trials Centres NEWCASTLE LONDON

71 Delegates Oxford

• Commissioned national nm services • Neuromuscular one year fellowship • National Neuromuscular Database

Nationally NHS NCG nm Centres NEWCASTLE OXFORD LONDON

National nm database structure Na. NDa TREAT-NMD MDC Project Management Group (PMJ) BMS CERTUS Database dev, hosting North Star SMArt. Net Cong MD & myopathy IBM DMD Clinical Dev SMA PMG Clinical Dev Clinical Networks PMG Clinical Dev PMG